All posts tagged: Rheumatoid arthritis

Remicade

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My treatment for rheumatoid arthritis, RA, is moving in the opposite direction of normal. Because I was diagnosed with two cancers and rheumatoid arthritis in the same year, the wonder drug biologics were off limits for me. They presented a higher cancer risk. Eventually as my RA worsened, quality of life became a factor. Methotrexate(MTX) injections help, but not enough. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success. Leflunomide was next, but it didn’t work either. The small molecule DMARDs were exhausted as treatments.  The biologics were next. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work. Next safest was Orencia. I was infused with Orencia. It helped. It helped about 50% which was the norm for it. I received monthly infusions. But my flares became much worse at 10-11 months. Orencia was stopped. Next is Remicade. Remicade, infliximab, was approved for RA in 1999. It is a TNF inhibitor. My rheumatologist had a serious discussion with me …

Methylprednisolone and RA

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Methylprednisolone (WOW, an impressive word!) is served up in a package of 21 four milligram (mg) pills (Medrol Dose Pak) with specific instructions as to when to take each pill. One time a nurse told me to start the pack the next day as the instructions start before breakfast and that would be the only way I could follow the instructions. I would have to wait through the night before I could start resolving my problem. This time around I saw written on the package that all six tablets in the first row for the first day should be taken on the day you receive your prescription even though you may not receive it until late in the day. All 6 pills may be taken at once on the first day or divided into doses for the remainder of the day. I have had this prescription twice for inflamed salivary glands after thyroid cancer treatment and twice for RA flares. I call it a miracle drug as it is so effective. My joints still hurt …

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Oral bacteria, rheumatoid arthritis and the TSA

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There is a growing link between oral bacteria and rheumatoid arthritis. I keep this in mind as I pack my suitcase for my visit to my favorite people, my grandchildren, Madison and Nate. I packed my fancy toothbrush, my Tom’s toothpaste, floss and pics. I had a small container of Biotene mouth rinse. However, I only had a big jug of Crest Pro Health Multi-protection mouth rinse. I could not find a travel container among my travel gear. I improvised. I had a snap-it plastic container, guaranteed never to leak. Perfect, I thought. I am set to go. Traveled. Arrived. Couldn’t find my mouth wash. Managed with what I had. Enjoyed a wonderful visit. Traveled home. As I was cleaning out my suitcase I noticed two pieces of paper. The first said my luggage had been chosen to be inspected. The second was as follows I found out what happened to my mouthwash. The TSA has saved the country again by confiscating the very mouthwash that helps protect my mouth from disease and consequently worsening …

A celebration of Recovery 10,000Waves

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About as high as you can go up into the mountains in Santa Fe on the road to the Ski Basin is tucked a high-class Japanese Spa specializing in bodywork and skin care. Ten Thousand Waves.  My destination. Just what I need. I desperately need. My treatment choice is NOSE TO TOES. A Mother’s Day gift certificate from Chris and Katie. I live in Albuquerque and this would be my first road trip in three years. I gassed my Tin Lizzy, my 5-year-old Mini Cooper Clubman. Pepper white. Turbo. Added bottled water, spa directions.  Put on my winter jacket. Ready to go. Finally!  This is November. I headed toward I-25. Sunny day. Cool. I am on the road.  I am also on the recovering end of a devastating year. The year was 2013. Almost three years ago. I had been diagnosed with a severe rheumatoid arthritis followed by two different diagnoses of cancer. Surgery. Radiation for each. Pills forever. No relief for the RA until this year with the start of Orencia. It is a …

Walking with Wisdom Woman

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RA Attitude After an MRI of my lumbar spine. Seeing the bad news. Being sent to yet another specialist. Spine and Pain Clinic. I was totally discouraged. In the same small office complex, I visit my rheumatologist, my neurologist, my oncologist, my palliative care nurse and now a pain doc. And this is just one of the office buildings I visit. I was discouraged because I could see it as another proof that my body was falling apart. Am I on a steep slippery slope looking downwards? Scary. I was scared. Then, as if by magic, my Irish-French Canadian genes kick in. What to do? A long time ago I had come to the conclusion that I needed to keep my primary focus on the activities of my life.  My writing. My family. My friends. My Hobbit House Projects. I would not ignore my medical issues. I would care for them well. And then I would bring my focus back to the activities of my life. Sometimes I could do more and sometimes less. It …

Ruth has RA, too

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  I love Ruth. I smile when I see her and Ruth always smiles back at me.   Her blue eyes twinkle with a happy secret. I would like to know what Ruth knows. She always looks the same. She wears a blue dress that looks just right. Her hair is neatly parted to the side. Her hands are folded on the front of her dress. Polite. Neat. Helpful. Ruth works in a  bookstore that has many books both new and old. There is every book you could ever want to read in Ruth’s store. The bookstore also has excellent coffee.  There are  big cozy chairs for reading.  It is a good place to spend lots of time. Ruth works in the best bookstore. I met Ruth at her bookstore. I was looking for a hard cover copy of Preston and Child’s Relic. Great book. It is everywhere, paperback, kindle, nook. The hard cover copy is not.  It is hard to find. I have read it but I wanted a hardcover for my library. Of course, I knew …

RA Tool Hand Exercises

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Another asset in our RA tool box is hand exercises. We need to maintain our flexibility and our strength. Deciding that I needed to be able to do more for myself, I asked my Doc to send me to the Albuquerque Health Plex Physical Therapy Hand Clinic. Wow!  is all I can say. My hands were thrilled with the weekly professional paraffin wax treatment. I learned a set of exercises that will help me maintain my hand function. I do them daily. They can be done anywhere.  Below are instructions for a few. I was fitted for hand orthotics custom made for me. I have them for night use when I am in a flare. My hands are protected while I sleep. I asked and I received. I am also fortunate to have a physical therapy department that is expert in the treatment of Rheumatoid Arthritis. Finger Walking Place fingers and wrist on the table palm down. Hold thumb in hitchhiking position. Walk each finger one at a time toward thumb. Return to original position …

gardening notes

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Albuquerque will be 95 today. Yesterday it was 98. We missed the set of super hot temperatures for July. So we are just catching up. Blue skies. Nice. This is the Rio Grande. We have plenty of water in it this year. And now we have more. Torrential downpour came later this afternoon. Reminds me of Miami. I am happy to see the rain. I would dance it it but the lightening forbids it.  I have those big office wastebaskets to gather water where it comes down the hardest. This is great for my RA as I just need to scoop the water in a little bucket to water container plants. I feel like I am doing a good thing. I have passed out of the RA Flare Fog. Don’t know if it is residual from the Medrol Pack or the Orencia starting to work. I am cheering for the Orencia. Feels so good to move.  Hope it lasts for awhile. Back out in the yard. This is Apricot Sunset. Climber. Strong and beautiful.  Roses …